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Tuesday, May 3, 2011

A Public Service Announcement

The other day I found myself having a really horrible dark thought that went something along the lines of, "Wouldn't it be great if [insert someone famous] had a stillborn baby?"

NOT that it would be great if a baby died. Obviously it's the saddest story in the world. I wouldn't wish it on anyone, famous or otherwise.

It's just that I think more people should be talking about it. It shouldn't be a secret.

It's not that stillbirth should get publicized as something that happens frequently. It's rare and it shouldn't cause undue anxiety. But it's hard to figure out how to present statistics and percentages in the most accurate way possible.

The fact is that stillbirths happen in less than 1% of pregnancies. But it's also true that a shitload of people get pregnant everyday. (Do you like my accurate number reporting? 1% of a shitload.)

It's different from, say, a rare type of cancer that only 5% of breast cancer victims end up developing. When you think of the relatively small portion of the population that gets breast cancer to begin with, then that 5% ends up being a really small number.

Compare that to 1% of all women who ever get pregnant in the world at any given time.

As many people have noted, membership to this club is much less exclusive than you might expect.

1% - those are slim odds. In all likelihood, an otherwise healthy woman with a low-risk pregnancy will not experience the death of that baby.

In all likelihood, it wouldn't have happened to me. Three months before Eliza died, we grieved with our friends whose baby boy twin died just before his sister made her own dramatically premature appearance in the world. I thought since it happened to someone we knew, the odds of probability would keep us safe. Once I was 32 weeks along, I breathed a sigh of relief. Viability was good, even if we had a premie. We were practically home free.

And then we weren't. And I couldn't believe it.

I'm sure it was no different for the teacher at David's school, who wept for us as she drove to her own thirty-six weeks check-up, grateful to be two weeks further along in her pregnancy than I had been when I lost Eliza. At 36 weeks pregnant, the end was in sight. The law of probabilities protected her. And then they couldn't find her baby's heartbeat.

I mean seriously. What are the odds?

Slim. Really slim.

But it's more likely that a baby will be stillborn than have Down's Syndrome.

It's more likely that a baby will be stillborn than die of SIDS.

It's more likely that a baby will be stillborn than be struck by lightening or attacked by a shark or killed in a home burglary or shaken to death or rolled over on by a parent.

But those are things we talk about.

The truth is that stillbirth is (thankfully) rare. It's exceptional and unusual and terrible. At the same time, it's common enough that it doesn't get any attention until it happens to someone you know.

But it happens. For many different reasons. For reasons doctors still can't explain. To educated women in first world countries. To women who take care of themselves. To women who follow strict guidelines of diet and exercise in pregnancy.

It doesn't happen very often, but it can happen to anyone at any time and I think there should be a way to raise awareness about it without fearmongering. Without our babies becoming names that can't be whispered in earshot of pregnant women, names you have to avoid mentioning at baby showers.

Stillbirth is not an experience that became obsolete along with with corsets and hoopskirts. It is not an experience limited to women with few resources and unclean water supplies.

It's not something that pregnant woman need to worry about, but it is something that pregnancy books should list resources for. It should not be used to frighten people, but information about it should be readily available.

There has to be a way to let people know that a stillborn baby will break your heart, but it doesn't have to wreck your entire life.

Because that is what people need to know--it's what I still need to be told.

I've said a million times that there is no upside to the loss of a baby, there is no silver lining, there is nothing that will ever make this remotely okay. But there should be a way to say that this is an event that you can survive. That this great loss can hollow out your guts and also enrich your life in unexpected ways. That great sorrow can make room for great joy. That you will survive this. That it will change you forever, but not all of those changes will be bad. That even five months later you will still hurt more than you ever have in your life, but you will also find hope again. This sort of information should be out there.

A friend of mine is pregnant now. She had an early pregnancy loss several months ago, so she knows something of my grief. I mentioned to her the other day that I hate that Eliza is a horror story--instead of a sweet, fat baby who makes people smile, she's a sad story that makes people scared. I voiced my concern that Eliza's story probably scared this friend of mine, heightened her anxiety about her current pregnancy. The thought that my daughter has become an unmentionable source of fear and pain--I hate it. But she said that wasn't true. That Eliza's story was actually an inspiration to her. A reminder to treasure every moment of her pregnancy, a demonstration of the way love and friendship can help us endure the greatest of tragedies, the way a baby can change our lives and make us love unselfishly, simply by existing.

This is what I mean when I say that someone famous should have a stillborn baby. Because it is not a shameful secret or the natural consequences of inappropriate behavior. It's a terrible tragedy that we can choose to make meaningful.

It doesn't happen to people who deserve it, or people who can handle it, or people who are being tested by God, or people who could have made better choices, or people who don't believe in medical intervention. It just happens. Randomly. Without warning. To people of every age, every race, every religion, every socioeconomic group, in every country, in any kind of relationship, with every variety of personal history, and every kind of birth plan (or lack thereof).

It will always be a terrible shock and the greatest of personal losses. But it doesn't have to be an experience that makes people feel isolated and ashamed.

The point of all this is an Associated Press article featuring a few bloggers who are well known in our little circles. Those of us who try to articulate our pain and put it out there for the world to see.

We're not alone.

We're not insane.

We're not irreparably damaged.

We are mired in grief and overwhelmed by disappointment and furious about the random unfairness of it all and really fucking sad.

But we are not so different from anybody else. We manage to find strength even though we are not strong. We are unfailingly generous and gentle with each other, and righteously indignant about the insensitivity of others. Our hearts fill up and our tears spill over when we see other people putting our experiences into words. We find ways to hold intact our sense of humor and our dignity and our marriages. The support we can offer each other cannot be overestimated.

We may be a very slim percentage of the population, those of us whose babies have died, but our numbers are much greater than you would think.

And, in one of the cruelest ironies of all, most of us are actually really cool people. The sort of people you would want to be friends with in real life (nerdy little folks like me generously included).

So yes, we should talk about stillborn babies, even though it's the saddest story in the world. Because you never know whose story might be the same.

23 comments:

what a good post. I really wish there was more info out there about stillbirth. It amazes me how I knew of SIDS, Down syndrome, and so many other things that can go wrong in pregnancy and yet I never heard of stillbirth.

One thing that has been very difficult about trying for children is the randomness of it all. Deciding to have a child opens you up to so much potential heartache--will the pregnancy be successful? Will the baby be healthy? Will we struggle to conceive? Like you said, it is good to know that you can suffer something unimaginable and survive it.

I think that evil little thought too. And then I think back to Lily Allen and how some media made it seem like her years of drug abuse or whatever made her deserving of having a dead baby. That was outrageous and horrifying. My favorite video of late was of the 3 coaches during the final four, especially when the mom broke down and said her body couldn't keep her child alive. I have to wonder how many people were actually watching it. Great post as always, much love~

Thanks for this. I kind of would like to print it out and hand it out to everyone on the street or at least flyer cars with it (perhaps hitting up the prenatal yoga classes - oh, ouch, is that awful of me to say?)

And you know how I feel about the celebrity thoughts. I have had them myself too.

I think I probably have more to say but I told you in an email an hour ago that I was going to bed and still haven't made it there, which means my eyes are crossing and I can't think straight.

With you all the way on this. Brilliantly said. I have expressed very similar sentiments from time to time on my own blog. It is like at some point after a stillbirth, a light goes off in your head and you think - why didn't I know about this? Why don't we talk about this? You have your stillborn baby, you stumble online feeling like you're the only person in the world to have ever been through it, then you realise you are so, so, so not alone. I hate it when people say they wont tell their pregnant friends about me, as it might scare them. I think my story shouldn't just scare (even though it is the ultimate horror story) but it should educate and inform. Create awareness. It is an unlikely way to end a perfectly healthy pregnancy. But it can happen. It does happen. It happened to me. To you. And a "shitload" of others. I don't know how we exactly go about this, but there are professionals out there earning big bucks, they need to devise a way. Not to scare, but to educate and inform. I don't see why we all have to be so silent about this.Brilliant, brilliant post. I too would like to pass it on to all I know. I think Sarah has a good idea for pre-natal yoga classes!xo

Sad topic, beautiful post!! I've had similar thoughts, I hate that Kristen is a source of uncomfort to so many people, the awkward silence that happens when I bring up her name (not always, but alot of the time)

here goes again... I would also love to see a celeb in the public eye go through this and somehow make people understand the reality of losing a baby. But I just don't see it happening. Lily Allen was six months pregnant but her loss was written off as 'just a miscarriage'. Amanda Holder (UK celeb) was SEVEN months pregnant; STILL it was written off as 'just a miscarriage' by quite a number of UK papers. I wrote to one to complain; they ignored me. kym Marsh is the only celeb I know of who usually gets her loss termed a stillbirth; I suspect maybe this is because she has been open with the name of the baby she lost. Apparently she regularly mentions him on her twitter account.

Incidentally... I hate that the most fervent wish I had for Kate Middleton on her wedding day last Friday is that she never knows the pain of babyloss. It's bad enough for celebs; how much worse would it be for a girl whose job now, effectively, is to produce the archetypal 'heir and spare'. Her job is to have babies. Going through this in the public gaze with the added spectre of 'failure - better do better next time' on your head... it doesn't bear thinking about, it really doesn't.

Brilliant post. I've thought the same things, yet perputuate the silence at the same time. Recently, I went to a "birthing way" and kept my mouth shut about my birth experiences (while everyone else there shared their birth stories). I just said "good luck". It's a hard line to walk, one I haven't found a way to be comfortable with yet.

Oh Brooke,You are always amazing with your words, but this post...this post deserves some kind of super-amazing, worldwide award! Amazing. That's all I can say. Simply amazing. I will be forwarding a link to a friend of mind who is currently laboring to deliver her SECOND stillbirth baby. I think your words will be such an amazing comfort to her. Thank you for being so vulnerable. Thank you for being so wonderful!

I agree wholeheartedly with what you say here. I wonder how much of the lack of information is partly due to people not being receptive to it. I've heard so many expecting mothers talk about how pregnancy books like What to Expect When You're Expecting are "too scary" but those books barely dip into what's really scary at all.

Which doesn't mean that there shouldn't be greater efforts to let people know about stillbirth (and other conditions like pre-e, pprom, cdh, etc.) My Dr's office gives a copy to WTEWYE to every expectant mother they see. I'm thinking of asking if they'd carry a copy or two of books like They Were Still Born for patients who may need them.

VERY well said, & I have often thought the same thing. There ARE celebs/public figures who have had stillbirths or lost babies... but (like our own losses) their stories tend to get brushed under the carpet after awhile, or vanish once a subsequent baby arrives ("And they lived happily ever after!"). I think most people just reflexively block such unpleasant topics from their minds.

Wow. This is great. Have had the thought about a celebrity MANY times. It would raise SO much awareness if it happened and the person handled it properly. Since this is a PSA of sorts, do you mind if I repost/link to your page? I'd love everyone on my blog to read this. Thanks again for the great post.

Great post. I've often had the same thought and even googled and found from the past many who have but not of recent. I think if it has happened some may keep it quiet which makes me sick to my stomach. If more people would talk about stillbirth I think it would be so much better.

Great post. This reminds me of a few recent conversations I've had with other BLMs. We are made to feel like such FREAKS because stillbirths are just SO RARE. We are made to feel like time travelers from the 1800s who will NEVER find ANYONE living who has walked in our shoes. HA!And don't feel bad about the celebrity thing. I'm on a loss forum with a variety of twinlostmamas, and we all agree that pregnancy (especially multiples) is glamorized so much in the media. Mariah and Nick's twins? PUKE.

For the record, and I'm sure you've see it before - a post about celebrity loss. http://in-their-honor.blogspot.com/

Also, a VERY sad article (old news, but news I hadn't seen) about Keanu Reeves' lost baby AND girlfriend: http://www.whoaisnotme.net/articles/2001_0418_kea.htm

Both Sara(h)s had interesting things-- first, prenatal yoga dispersal made me laugh and Sara #2... I cannot even imagine or begin to think of how I could possibly be knocked below what I already think is the bottom of my LIFE. That breaks my freaking heart to hear multiple baby deaths for one person. Such disgust I feel for that pain.

We aren't diseased, dammit and I hate that our lives and the lives of our WELL DESERVED babies are not recognized with such sincerity as they should be. Makes me want to hit people and scream wild obscenities. Don't look at me with those sad eyes and pretend like this doesn't f-ing matter.

I saw this, this morning and thought I'd share. Famous people do have stillbirths. This guy is the equivalent of our Brett Favre. (Ok, I admit - I had to google the name of a famous football player that wasn't Joe Namath and was relevant to our time.)

It's a very brave story for them to print, and for the Hall's to share with a national newspaper.

Your post has me thinking about how there isn't *one single* support group in New York City for parents of stillborn babies. At least not that I could find online. A lot of miscarriage support groups, but that is a very different thing. I refuse to believe we are the only people who had a stillborn baby in NYC in the last year...

It's got me thinking about how I can change that. Thanks for your thoughtful post, as always. xo

Hi. I just want to say, as a non-BLM, 7 months pregnant with my first, I am so grateful to have stumbled upon your, and other BLM, blogs. I had no idea stillbirths still happen. I think it's been so helpful to women how often people now talk about miscarriages, whereas I think they were once a silent struggle for women. I went in to this pregnancy very well knowing the possibility of miscarriage and I think it helped me mentally prepare (as much as you can mentally prepare for something you have no idea will actually be like when you go through it). Reading these blogs, while some may think morbid, has been so helpful to me to understand that, while all my appointments have been "perfect", you just never know. Reading your blog and knowing more about stillbirth hasn't taken anything away from my pregnancy, but it has made me aware of the possibilities...and shown me that if, god forbid, it should happen to me, there is life after death, there are resources and a community to help me through it. So, thanks to all of you for being so open and I do hope this information makes its way into pregnancy preparation resources, as you said, not to cause fear, but to inform. Thank you.

I'm a bit late for commenting, but what an eloquent post. A few weeks after I lost L, I actually googled "Celebrity and stillbirth." Lily Allen! I was horrified by my behavior and it didn't make me feel any better... I just wanted to know that I wasn't the only person to whom this had happened (it certainly felt that way).